Life with a shunt

Well we were hoping to make it a month without a trip to the neurosurgeon, but today we found ourselves back in the office again. At our last visit, her shunt was turned up again which slowed down the amount of fluid coming off of her brain. We were happy to see that the swelling that she had had around the shunt only came back a little and we thought we were ok. Unfortunately, over the past 3 days I noticed her head circumference was increasing, and her fontanelles (soft spots) were getting firmer. Yesterday the fontanelles started bulging, and this morning her eyes began to “sunset” and she was having trouble keeping them aligned (common for some babies, but not something that she has had trouble with before). These are all signs that too much pressure is building up in her brain. A quick phone call and we were back in the office for another adjustment. It appears that she cannot tolerate the slower setting, so for now we are sticking with the faster one. Although she was not quite “herself” the last couple days, she handled the increased pressure fairly well, even smiling for me in the waiting roomJ

Today was a huge reality check for me. Thanks to much prayer, Meghan has done amazingly well these past 13 weeks of life! We have settled her firmly into our family, and despite weekly therapy appointments that “remind” you that everything is not 100% normal, I have come to a place where it at least feels normal. Today was a “gut check”. Life with a shunt is not normal, and sometimes, it is scary. I am so much more thankful today for all the mundane moments we share at home, and even more thankful for the limitless grace, strength and peace that is extended to me by my Savior. The only way I can continue to walk forward without fear, is because I know He has already been there, and is leading me on.

O Lord, you have searched me and you know me.

You know when I sit and when I rise;

you perceive my thoughts from afar.

You discern my going out and my lying down;

you are familiar with all my ways.

Before a word is on my tongue

you know it completely, O Lord.

You hem me in—behind and before;

you have laid your hand upon me.

Birthday Presence

This week was a busy one in our house! Meghan and Addison were dedicated at church on Sunday which was a really special time for our family. Amidst the joy of the moment, our sweet Meghan treated our pastor to agiant noisy baby poop mid-prayer. Of this we are sure- there is nothing wrong with her bowels! It was a memorable moment to say the leastJ

We had a follow up with Meghan’s neurosurgeon yesterday. Since the swelling around Meghan’s shunt has been gone for a couple of weeks, she changed her shunt setting again, and slowed the flow of fluid a little bit. Hopefully enough scar tissue has formed around the hole that she will be able to tolerate this slower setting without it swelling up again. The goal is to slow it again next month, so that we don’t risk bleeding in her brain from pulling too much fluid off too quickly. Dr. R said that we will plan to get a follow up MRI of her brain when she is 5-6 months old to see how things are progressing. So,continue to pray that her brain is allowed to fill back in as all that fluid is removed (slowlyJ).

Today we saw the orthopedic surgeon again. PT was on hold for a week since we have noticed a popping noise in Meghan’s neck when we are holding her or doing her physical therapy. Since she has the vertebrae in her neck that only formed on one side, we were a little concerned that there was something more serious going on. Thankfully, he said that because the popping is so “dramatic”, if it were a bony problem she would probably be having severe neurologic symptoms to accompany the popping, which she isn’t, so he thinks it’s two muscles riding over each other that is creating the pop. Hopefully as we continue to stretch her neck, that will lessen. When we do an MRI, Meghan will have to be sedated, so we will wait and get both an MRI of her brain and cervical spine when she goes at 5-6 months. Until then, on with PT!

In addition to our trip to the neurosurgeon yesterday, we celebrated my birthday. There’s nothing like a milestone to remind you of where you are in your life, and where you have come from. Last year at this time, I had no idea that I would have another baby, a blog, and a different job in a year. So much about life can change in such a defined amount of time. The day started off a little rough- sleep deprived calamity commenced as soon as I hit the floor. Somebody’s peeing on things they shouldn’t be, diaper change, vases of fresh flowers are being knocked on the ground, another diaper change,breakfast dishes are everywhere, a FOX ate my new flip flops, I’m busyguilt-tripping myself that I didn’t get up earlier to work out, and agh! I have to get in the shower because we have to get downtown to see the neurosurgeon (more pee, another diaper change). I was starting to work myself into an it’s-my-birthday pity party when I just said Lord! Help! I was quickly reminded that the only reason I’m frustrated was because I had completely selfish expectations of how my morning would go. This life is no longer completely about me, and it’s not even all about my kids. It’s about Him. It’s about laying aside the part of me that wants to be first, and putting Him first. Suddenly, my perspective shifts,and I became intensely grateful for the chaos, because if I wasn’t blessed with my family, fresh flowers, a place in the country that is home to many forms of wildlife, and the gift of just going to visit the doctor instead of being inthe hospital on my birthday, I wouldn’t have any of those things to start my day off with. I may fail miserably at having a good attitude all the time, but that’s ok. I’ll ask for forgiveness, again, and He loves me enough to remind me,again, that “every good and perfect gift comes from the Lord”. So happy birthday to me…I have a couple of prettygreat gifts this year. 

A picture is worth...

I'm pretty excited to share these pictures! To have the opportunity to have them done, and for Meghan to be healthy enough to participate is a gift beyond words right now. A dear friend and photographer came to the NICU to take some pictures of Meghan when she was a couple days old, but with everything going on, we never got to have a newborn family session. SO, at 7 weeks old, Meghan made her official debut in some family photos with everyone in them:) A big thank you to Rachel Marie Photography for her talent, and the very sweet way she was able to capture our family, Meghan, and the essence of my Addie (who barely held still long enough for a picture!). She had some really fun outfits and props! Head on over to her blog to see more, and to see some of the amazing work she does: www.rachelmariephotography.com/blog

Miss M. has been doing great! We're rolling with Physical Therapy now, and starting Occupational Therapy and Speech therapy this week. The therapist we are working with is wonderful, and as it turns out she is the one that saw Meghan in the NICU, and works closely with her neurologist. She gave us some great exercises to do with her, and in just a couple weeks we can see her improving! We're able to get her neck to relax past her midline, and where are arms have been held close to her body, I can now raise up her arm on the right, and the left with only a little complaining:) Her 2 month pediatrician follow up went well, and she's up to 9lbs, 6oz. 20th percentile....she's a little peanut!

This week....drumroll.....NO DOCTORS APPOINTMENTS! Woo hoo! Just therapy:) Next week we go back to the neurosurgeon, and if all is well we may not have any appointments for a couple weeks. Thank you everyone for praying for her, and please continue to pray that everyone stays healthy and Meghan keeps progressing well with no shunt complications!